Multiple Sclerosis & Me

I was first diagnosed with MS (Multiple Sclerosis) late March of 2001. My first symptom was Optic Neuritis (swelling or inflammation of the optic nerve) in my left eye.  Optic Neuritis is often associated with diseases causing demyelination (a loss of the protective myelin layer of the the nerve) of the optic nerve, but sometimes the cause is unknown.  Multiple sclerosis (MS) is the disease most often associated with optic neuritis.  It is not uncommon to have an episode of optic neuritis prior to being diagnosed with MS.  In fact, optic neuritis is often the initial sign of MS.  Since this is a "sign" of MS, the doctors ordered more tests to confirm or deny MS. Now the only actual test there is, to totally confirm 100% that one does have MS, is an autopsy (after you are dead).  Since I have no plans on having that test preformed any time soon, all they can do is a lot of test.  By process of elimination, they can determine how likely one is to actually have MS.  My first test was an MRI (Magnetic Resonance Imaging) which showed two lesions (damaged areas or scars) in my brain.  The next tests were thorough blood work, testing everything from a vitamin deficiency to AIDS and syphilis, all the tests came back negative.   My next series of testing was Evoked Potentials or Evoked Response which detects a slowing in nerve impulses.  The Evoked Response test showed that my hearing, left eye and both arms are slow in response.

The doctors then informed me that they are 99.5% sure that I have MS.  So they begin treatments, which means giving myself a shot one a week.  The medicine in the shot is called Avonex and it has only been around for a couple of years.  The major side effects are; chills, flu like symptoms and body aches.  Like I wasn't feeling bad before.  Well my first shot was given in my hip by my a nurse friend of ours on July 4, 2001.  It was done late at night so that I would sleep away most of the side effects, at least that was the plan.  I woke up hours later and just couldn't get warm.  Never mind this was the middle of summer.  I threw on pair of sweat pants and shirt and grabbed a heavy blanket to cover myself with as I tried to go back to sleep.  Early the next morning I woke to sweating from all the covers and clothes that I had on.  Pealing them off me as fast as I could, I started to notice the pain in my whole entire body.  As the day progressed, the pain was unbearable.   Getting a hold of my general practitioner, he prescribed a strong pain reliever with a warning to get a hold of my neurologist before I took another shot.  Between my GP and my neurologist, and days later in still a lot of pain, they finally decided to get me off of the Avonex.

Now there are two other options, right now, for people with MS, take a different shot once every other day or a shot once a day.  Both are completely different medicines, but work similar, to keep the MS and it's disabling symptoms in a dormant stage as best as possible.   My neurologist hasn't decided which one to try yet, letting me get all of the Avonex out of my system before trying something else.

As of August 3rd, 2001, I have been prescribed the second new medicine that they use for MS patients, Copaxone.  This must be given in a daily injection.   We are all hoping that the Copaxone works.

August 16, 2001 update:  I have been on the Copaxone for over a week now without any side effects.  However, there are two things bad about Copaxone, 1st is that I have to give myself a shot everyday and the second one is that the areas do tend to be sore for almost a week.  There is only seven places (back of arms, front of thighs, hips and stomach) I can give myself the medication, so I pretty sore in places most of the time.  I am trying to keep my spirits up and my faith strong.

December 9, 2003:  I haven't written in quite a while, so here is another update.  On July 27, 2002, I had a mild heart attack.  They don't know if it was due to the MS or what. 

I am still using Copaxone and doing fine on it.  No signs of side affects accept for one time when I had a couple of drinks and then took my shot.  The hot flashes lasted forever (at least it seemed like it) and I felt nauseous and finally vomited.  That was the first and only time. 

I am losing feeling in my legs and arms at times.  It doesn't last long, a few days at the most, but it is getting scary.  Also I am having very bad muscle cramping (Charlie horses) and just always sore all over.  My hearing is getting worse, but still able to hear mostly everything.  My memory is getting really bad.  Mostly it is short term memory, though I am having trouble remembering my past a lot of times.

April 21, 2005:  Things are going along okay.  The newest "symptom" of this wonderful (insert sarcastic tone) is bladder spasms.  Bladder spasm happens when the muscles around the bladder neck tighten and produce painful contractions.  I cannot describe the pain that I been enduring, except to say that it is real close to labor pains.  It has been two days now since this new symptom has occurred and the waiting for relief seems to be nonexistent.  I was given suppositories that consist of a blend of Belladonna (a poison) and Opium, which has given me no comfort as of yet.  Guess time will have to heal this.

I will keep in touch and let you know how things are going.

 

 

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